AVMs of the Cerebellum

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AVMs of the Cerebellum

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Members: 82
Latest Activity: May 19

Discussion Forum

New Kid on the Block :(

Started by Jackie_B. Last reply by Julie May 19. 3 Replies

Hi everyone! Recent AVM diagnosis....right cerebellum. I have no idea the grade or size just the radiologist reading from ER MRI finding stating a "prominent AVM on right cerebellum" Wanting to see…Continue

ok but not OK

Started by livingthenightmare. Last reply by livingthenightmare May 14. 5 Replies

I had a hemorrhage in my cerebellum three months ago that has now been diagnosed as being caused by a pial fistula, a rare type of arterial malformation. I'm waiting for a call from the doctors, they…Continue

Getting Groceries

Started by multistats. Last reply by Howard Mar 20. 19 Replies

When I was in the grocery store earlier today, I remembered the problems grocery stores provided. This problem was true of stores in general, but was particularly true of grocery stores. Those of us…Continue

Tags: grocery, stores, up, throwing, dizziness

Lump in throat?

Started by PKP. Last reply by Danijo Nov 22, 2014. 2 Replies

Does anyone else have a feeling that there is something stuck in their throat? I feel it sometimes, I thought it was allergies but remembered my doctor saying there was a link, between the AVM and my…Continue

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Comment by Suzy E on May 2, 2015 at 10:00am

I just read a very hopeful post from someone who has suffered surgeries over the past 10 years. While they said it was a hard decision, they finally opted for brain surgery and a post angiogram showed AVM obliteration. I had surgery too (albeit a long time ago) and AVM obliteration was the result too. I'm not saying brain surgery is for everyone or even guaranteeing a positive result (I don't know all your circumstances and am certainly not a medical doctor), but it certainly speaks to having hope for a brighter future. At least it did to me. Stay as positive as possible everyone! :)

Comment by Julie on December 1, 2014 at 12:55pm
* not sure what I typed for auto-fill to fill in "indoor", but please ignore that word.
Comment by Julie on December 1, 2014 at 12:53pm
Hi -one of my OTs said this, too; however, my AVM bleed was in the right cerebellum, and my left-side is very, very partially paralyzed and have some indoor donated/twitchy movements and other ataxic-signs, so I'm starting to think that I'm just a freak-of-nature - in a good way.
Comment by duncita on December 1, 2014 at 11:23am

Suzy E-No problem! I just thought it was really interesting...

Comment by Suzy E on December 1, 2014 at 10:27am

Duncita, I failed to mention that I got an email about your posting. Not magical by a longshot...lol.

Comment by Suzy E on December 1, 2014 at 10:23am

Duncita... for the life of me I can not find your post about AVMs of the Cerebellum affecting the same side of the body. Regardless this may explain why one side has always felt different from the other even going on nine years now. Good information! Thank you for posting this... :)

Comment by Suzy E on September 12, 2014 at 7:35pm

Even though we all have had AVMs in our cerebellum, each case is different. While we can relay our experiences, the AVM doctor probably has the best answers to your questions. And I concur with Ann that while it may be a bit more work on your part, a 2nd, 3rd, even 4th opinion can't hurt when it comes to your health (and especially if you feel like you are "in the dark"). Best of luck to you. :)

Comment by PKP on September 11, 2014 at 7:53pm

atnt...thanks, I cant seem to get straight answers, I understand that my case was presented to the neuro/vascular "team'" so it was collective choice, but I feel so in the dark.... was hoping this venue would offer some perspective.

Comment by Ann Ning Learning How on September 11, 2014 at 7:46pm

Hi, PKP - sorry, no insight on what will happen since mine ruptured without me knowing I had one. Just wanted to say - how 'bout a 2nd or 3rd opinion? Or perhaps you could press your Hopkins docs for answers… bye, atnt.

Comment by PKP on September 11, 2014 at 7:42pm

I was diagnosed about a week ago. Was told by Johns Hopkins a few days after MRI, CT, and Angiogram that they would not treat it based on location and size. That treating it would cause more harm than good. I do not know much at this point... have headaches, poor balance on left side and facial twitching. What happens with this? Will this just get worse?

 

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Posted by Danijo on August 3, 2015 at 7:10am 0 Comments

I am so incredibly grateful for this website. For helping me at a time when I was lost.

I recieved so much insight and support came from AVMsurvivors. which in turn helped Scott with his recovery.

I have started a new blog if anyone…

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